Personal Health RecordsHari Mitra, Robert Reza, Kristin Do, Melvin Young

Ideally, what is a PHR system? Contains comprehensive individual

clinical data Capable of population via EHRs Includes the ability to communicate with

providers, schedule appointments, renew prescriptions and health plan benefits

Control on access to data

Why are PHRs an important area of study? PHRs are not standardized

Due to different sources of information and different features, there’s a lack of interoperability

This is exacerbated by the current state of technological innovation and lack of policy guidelines

Without interoperability between information sources (HIEs) the potential of PHRs will remain unknown

In order to be used properly, security standards must be determined This is doubly true if the PHR system is internet

accessible

Why are PHRs an important area of study? The potential for improved health

outcomes Consumers would be more involved with

their own health care and form stronger physician-patient relationships

Providers would have improved decision making, and have less avoidable medical errors

Payers would save costs from avoiding duplicate tests

Overall population health improvement

Highlights of Study Government

National Committee on Vital and Health Statistics National health information infrastructure

requires data to support the needs of patient care, population health, and personal health Requires individuals managing their own

wellness and healthcare decision making Includes a PHR that is created and controlled

by the individual or family Includes information and tools such as health

status reports, self-care trackers and directories of health care and public health service providers.

Highlights of Study

Highlights of Study Journal of the American Medical Informatics

Association – Author: Shane Reti “that no one knew what everyone else was doing,

that PHRs were being developed in silos and that the good and not so good experiences were not being shared in the environment”

Commercial leading PHRs products such as Google Health and Microsoft HeathVault are not HIPAA covered "are able to be more creative and move quicker

because they don't require the same sign offs and double checks of HIPAA"

PHRs are not currently patient centered because of technical issues of information processing. “overwhelming non-relevant information that was

being fed into it from claims data”

Key Findings According to the National Committee on

Vital and Health Statistics: Identifying potential liabilities, rights and

obligations of consumers, providers, patients and other stakeholders in PHR systems

Those who use PHR systems should have the right to make an informed choice based upon the uses of their personal health information

Key Findings Privacy is a big issue and gauging the

public’s attitude towards sharing their personal health information is important

According to the study - Sharing Medical Data for Health Research: The Early Personal Health Record Experience it was found that: Of all the participants 91% were agreeable to

sharing their information for the purposes of research Also of the total participating 90% agreed to

participate when they could do so anonymously

Key Findings The demand for PHRs has been increasing

more and more, but security and control of information continue to be issues

According to the study “Early Experiences with Personal Health Records” the shortcomings that need to be addressed for the future of PHRs are: Interoperability Knowledge bases within the PHRs Patient control of their health information

Clinical Trials Chronic Disease Communities

Access to information

Key Findings The development of completely functional

PHRs can lead the way to creating effective HIEs in the near future

According to the study “Personal Health Records: Definitions, Benefits, and Strategies for Overcoming Barriers to Adoption” issues that must be addressed are: Who pays for PHRs? There is a need for “lay” terminology due to

different levels of medical knowledge The lack of successful PHR business models

could limit widespread use

Opportunities• Interoperability /HIE

More accurate health info. on patients Ad Hoc Information in emergency

situations Access on mobile devices

• Condition Tracking For patient- get an idea of how they are

doing For physician- get alerts on critical patients

• Offer education/ support groups Facebook-like ads for education Anonymous support groups

Research Expansion/ Opportunities• Users/Data

Identify: who uses, at what frequency, what purpose, and what the impacts to patient personal activity and health are

Which conditions are PHR most beneficial? What data should be in PHRs? Patient data reliability

• Adoption What platforms work best? Are monetary incentives affective for expansion of PHRs? Would teaching PHR/EHRs in school spread adoption?

• Privacy/Storing PHRs Who should store/protect all this data? What protections should be in place to verify end users? Who should have access other than the patient? Who should pay for this?

• Interoperability Interfacing and two way communication with different types

of EHRS

Benefits of Studying PHRs Accurate analysis of the usage of PHRs

Benefits? Risks? Claims Support, Privacy, Interoperability,

Workflow Extend the knowledge about PHRs to the

public Increase in willingness for people to adopt Financial incentives

Benefit the health of the public May lead to lifelong record of health

information that is maintained by individuals – easier access

Conclusion Personal health records are necessary to

increase the quality of health care Lead to effective HIE adoption

Need to move from location-based patient data to patient-controlled data All patient data should be gathered and

accessible through one system Many issues regarding PHR implementation

Privacy Interoperability

Market-based health care

References Personal Health Records and Personal Health Record Systems: A Report

and Recommendations from the National Committee on Vital and Health Statistics http://www.ncvhs.hhs.gov/0602nhiirpt.pdf

Improving personal health records for patient-centered care http://jamia.bmj.com/content/17/2/192.abstract

Halamka, Mandl, Tang. Early Experiences with Personal Health Records. Journal of the American Medical Informatics Association Volume 15 Number 1 Jan / Feb 2008.

Personal Health Records: Definitions, Benefits, and Strategies for Overcoming Barriers to Adoption. Journal of the American Medical Informatics Association. Volume 13 Number 2Mar / Apr 2006.

Daniel, J.; Posnack, S.; Personal Health Record Website Inventory, Analyses, and Findings. Consumer Education and Engagement Collaborative, Massachusetts (2009).

Tang, P. C., Ash, J. S., Bates, D. W., Overhage, J. M., & Sands, D. Z. (2006). Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. J Am Med Inform Assoc, 13(2), 121-126.

Grossman, Joy M., Zayas-Cabán, Teresa, Kemper, Nicole. Information Gap: Can Health Insurer Personal Health Records Meet Patients' And Physicians' Needs? Health Affairs; Mar/Apr2009, Vol. 28 Issue 2, p377-389, 13p.